Denying dementia: what to do when they won’t accept a diagnosis

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Nobody wants to be told they have dementia, but if the person you love refuses to accept their diagnosis, don’t despair. There’s plenty you can do to help them come to terms with it and get the help they – and you – might need.

The tests have been done and the diagnosis is official, but your loved one may still refuse to discuss it or believe it – even if they’ve spent months or years experiencing symptoms. Dementia denial can be a particularly frustrating obstacle for family and friends, especially if they’re trying to sort out practical ways to keep the person they love safe. But it’s also very understandable…

Put yourself in their shoes

Imagine being told you have a chronic and incurable condition. Would you simply nod your head and agree, or might you want to question it, particularly if you’re feeling quite well and have been telling yourself for years that your ‘forgetfulness’ is just old age?
So ask yourself… can you really blame them?

Five reasons for dementia denial

1 They haven’t yet noticed their symptoms
The person you care about might deny there’s a problem because their dementia isn’t really affecting their life too much. This is often the case if, for example, their spouse or partner has been covering for them for quite some time, helping them with everyday activities that they might otherwise struggle with.

2 It’s a coping mechanism
Sometimes denial is simply a way of masking the fear, grief and loss that a person newly diagnosed with dementia commonly experiences. After all, it might seem easier to say ‘there’s nothing wrong with me,’ than to face what could lie ahead. This often painful struggle with acceptance, can also cause anger, moodiness and severe depression.

3 They may not remember the diagnosis meeting
Even if the person you love does initially seem to accept their diagnosis, there’s a good chance that they may soon simply forget!

4 They think it’s just part of getting older
One of the biggest myths surrounding dementia is that it’s a normal part of ageing, and that ‘everyone loses their memory’ in the end. This is not the case. Dementia is an actual brain disease and the decline in cognitive faculties is very different to the occasional absent-mindedness that can happen to many people (and not just older people).

5 The stigma of dementia
Although dementia awareness and understanding is increasing all the time, dementia is still widely misunderstood and feared. Unfortunately, many people today still feel embarrassed, ashamed or worried about ‘what others might think’ if they admit to having dementia. It’s understandable therefore that they might not want to draw attention to their illness and so deny they have a problem.

How can you help?

– Accept that denial is often part of the dementia journey
While the person you love might point blank refuse to accept their dementia at first, as their condition progresses they will probably come to accept their symptoms as part of their lives. They may never truly accept their diagnosis, but they are likely to reach a point where they stop saying there’s nothing wrong with them.

– Explain it in more gentle terms
Many people don’t like the ‘D’ word – dementia. It scares them so much that they refuse to believe it. However, if you explain that their memory problems are because their brain isn’t working as well as it used to, they may be more willing to accept it. And if they can simply accepted that their memory ‘isn’t what it used to be’, it’s a step in the right direction.

– Try a few therapeutic liesTherapeutic lying is the practice of telling a few ‘white lies’ to keep a loved one with dementia safe or happy. If they’re refusing to accept their dementia diagnosis, and are therefore also, for example, refusing help and support from professionals, then you could introduce these people as ‘friends’ who are there to help. Many older people are fiercely independent and proud, and are not used to sharing their private business with strangers. If they think a professional carer is there as a ‘friend’ they may be more willing to accept them.

– Appreciate that ignorance can be bliss
If the person you care about can’t remember that they have memory problems – and that’s why they’re denying their dementia – then consider whether you do really have to keep reminding them. After all, if they’ve forgotten, it probably means they aren’t particularly stressed by it.

– Take measures to keep them safe
If your loved one continues to deny there’s a problem, you still need to ensure they stay safe. This could mean, for example, asking neighbours to look in on them or installing aids around the house to prevent accidents. There are lots of ways to keep someone safe at home, which won’t necessarily impact on their daily life and make them feel like they’re being ‘molly-cuddled.’

– Find ways to work around it
If they still refuse to accept that they have dementia, sometimes it’s easier and kinder not to force it. Instead, try to accept that your loved one refuses to believe they have dementia, and focus on finding ways to work around it.

When other people won’t accept a dementia diagnosis

Sometimes, it isn’t only the person with dementia who refuses to accept it…other friends and family may deny it too, particularly in the early stages when the signs of dementia are less frequent or obvious.

3 reasons they’re denying it

1 They hope it might go away
Dementia is an incurable condition, but that doesn’t stop people secretly hoping that the ‘good days’ are actually a sign that the person is getting better. If your loved one with dementia is still quite self-sufficient, family members may brush off the other little signs and symptoms – the repeated conversations, lost journeys – as a one-off.

2 They rely on that person
Maybe they’ve always looked to that person as a source of strength, information or support. Accepting diagnosis would mean they might have to also accept a different role – which is understandably scary – and a different future.

3 They don’t see the person regularly
If they don’t spend a great deal of time with the person who has dementia they may not be as aware of the impact the condition is having. For example, they may say, ‘But I spoke to Auntie Sue last week and she seemed fine,’ when you know that she hung up the phone and didn’t even understand who she was speaking to.

How you can help

– Have a family meeting
This can help to provide reassurance and give you a chance to explain the situation to close family or friends. You may want to bring along literature, leaflets or website pages for people to take away and read or look up ( fear and denial often stem from ignorance). The person with dementia may or may not want to be present during the meeting, depending on whether they also accept the diagnosis.

– Explain that it’s ok to be worried
A dementia diagnosis is obviously going to leave many people feeling concerned about the future – which is absolutely normal. However, even if they still refuse to accept a diagnosis, you should let them know that you’re there to help and support as much as you can.

– Discuss the implications of denial
While it’s important not to scaremonger, it’s also vital that everyone understands that failing to accept a dementia diagnosis could ultimately be detrimental for everyone.

What’s the harm? The risks of dementia denial

Persistently refusing to accept that anything is wrong can, sadly, have some serious implications for families on the dementia journey, such as;

– Accident and illness
If the person with dementia tends to walk off and get lost, or is unsteady on their feet, refusing to accept that this is a result of dementia could ultimately put them at greater risk of having an accident because of it. They may be more likely to double dose any medication they’ve taken because they can’t remember whether they’ve already taken it.

– Family conflict
If some family or friends accept the dementia diagnosis, while others don’t, this can lead to anger, bitterness and conflict – none of which is in the best interest of the person with dementia.

– Lack of medical help
While there may be no cure for dementia yet, there are drugs that can help to slow down its progress. Refusing to accept their diagnosis, could mean that the person you care about isn’t able to access drugs that could help improve their early symptoms.

– Financial exploitation
As dementia progresses, it may be easier for unscrupulous people to take advantage of your loved one’s memory problems. Their vulnerability could make them targets for financial fraud, theft, burglary or worse.

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